Monday, August 27, 2012

My baby's face is shrinking!! I'm pretty sure not many people can say that with such enthusiasm. We're something like five or six weeks without any seizures and three weeks off of the steroids. Levi is back to his happy, dramatic little self and is making huge strides in his cognitive development. He's suddenly communicating with us in ways that he should have been a few months back, but he's doing it all at once. He's calling a few objects by name. He's trying to get our attention. He's using words and signs appropriately. It's been very encouraging. I don't remember if I've already mentioned this, but just before the seizures started, his doctor was a little concerned about his development. There were several things that he wasn't doing that an eighteen month old should be able to do. Being behind on one or two of those things can be completely normal, but he was behind in several. His neurologist does attribute this to his seizures and said that all of this development happening so quickly after putting a stop to the seizures is a great sign that we've got the infantile spasms managed.

It's still been hard to deal with the concept of a child with epilepsy. Life is pretty normal other than the morning and evening meds, but the idea of it has been difficult for me handle. I've had so much support and encouragement from so many dear friends, though, and some days it has been those very thoughts and prayers that have helped me push through. I had one comment, particularly, this past week that meant so much. I've had so many texts and calls seeing how I'm doing, sending prayers, and sending youtube links about how good our God is. But, for some reason, one little phrase from a friend put into words what I couldn't.

"That has to hurt your heart," she said. It was a simple sentence - one little phrase. It was the only thing that anybody has said to me, through all of this, that made me bawl my eyes out. That was it. The thing I couldn't put to words. It wasn't some beautifully written card with eloquent words; it was one little, simple phrase, sent in a text. And, for some reason , the tears that I cried when I read that phrase were like a salve to my hurting heart and I've been able to face each day with a new outlook. Sure, my heart still hurts when I think about it. But, in spite of everything, Levi is doing fine. In fact, he's growing by leaps and bounds! And, so am I.

Thank you, dear friend, for reaching out with the most simple, but heartfelt words.

Friday, August 17, 2012

So, I finally feel like we're kind of catching up on life since we spent a week in the hospital and have had mountains of paper work and bills to catch up on. We paid off the last of our debt this week (save the thousands of dollars of medical bills that we've now accumulated). And, we're starting to get acclimated to life with a baby on scary medicine (he's doing great by the way). All in all, life is moving forward!

J is working alot of extra hours, partially to make up for time missed, but mostly because he has a huge project due in a couple of months. He worked from 8am to 3am the other day, which, unfortunately, is not necessarily a rare occurance. He frequently works 8am to 9 or 10pm, but makes sure to get an evening or two a week at home with the fam. Lately we've been biking together on his nights off. We load the boys into our little bicycle trailer. They're so cute all cramped up in that tiny, little space, bump bumping down the road. (I wish I had a picture.)

The weather here has been so gorgeous, which has made our little jaunts so refreshing. We'll usually go to a park and let the boys out to play and then take the long way home. The boys laugh and talk through the whole ride. I love it. It makes the extra-long stay-at-home-mom days more bearable to have that quality time as a family. I am truly blessed with an amazing family.

On a completely different note, I just gave my boys each a granola bar to snack on. Toby must be growing as he's constantly complaining that he's hungry. I, being the responsible mother that I am, handed them their granola bars and caught up on a couple of my friends' blogs. The next thing I know, Toby is chasing Levi through the play room trying to eat an entire granola bar worth of crumbs that are matted to Levi's pajama pants. For the most part, he succeeded. And yes, it's 1:43pm and my boys are still in their pj's. It's that kind of day.

Friday, August 10, 2012

I woke up bright-eyed and bushy-tailed this morning. It felt good. I hadn't done that since... who knows when? I mean, I actually woke up before my boys! That has happened like five times ever, and mostly because I had to, not because I wanted to. Anyway, I woke up to the crisp, fresh morning air permeating my room; and it delivered a wonderful message - fall is coming! It's just around the corner! I went downstairs, started a pot of coffee and proceeded to open every window in the house. I opened our back door and breathed in the day. I think I breathed it all the way in to my soul. With that breath came so many emotions - the joy of knowing I'm alive and have such a beautiful little family, the sweet melancholy that another season of my life is fading away, the ambition to get outside and savor every moment, and the lethargy to sleep this beautiful day away. I love how this kind of day always brings such duplicity. And, yet, I kind of hate it, too.

At this point, I seem to have given in to the latter emotions - melancholy and lethargy. I had to increase the dose of Levi's seizure meds today. This has been the plan all along; but it bothers me - alot. I actually teared up as I opened that extra capsule and sprinkled it into the mushy bite of banana. I know that it's helping to keep him seizure free, but I hate to think of what else it's doing to his body. All of those negative side-effects are constantly floating in the back of my mind. So, I think it was that moment that tipped the scale and dumped me right into the bleakness of a chilly, overcast day.

The beauty of this kind of day, though, is that the clouds will dissipate soon enough. I'll make myself take the boys outside to play and I'll enjoy the warmth of the sun that counteracts the cool breeze. I'll get the chance to take another breath. And another. It will be beautiful. And, more than likely, it will tip the scale in the other direction.

Saturday, August 4, 2012

That's right, I've been waiting for the right time to use this title since I started. I'm witty like that. And a little twisted.... but I have to find humor in all of this somehow. :) Now for the update:

It's official. My son has epilepsy. I know. You're thinking, "But, your first post said he doesn't have epilepsy, he has infantile spasms. I'm so confused!" As was I. But, I think I have a better understanding now. Apparently infantile spasms fit under the larger umbrella of epilepsy. The spasms are just one of the ways that epilepsy can present itself. The good thing is that Levi doesn't have hypsarrhythmia (those bad brain patterns that can cause cognitive delay), which usually walks hand in hand with the spasms. The stinky thing is that he has epilepsy. In other words, the EEG showed that he has a low threshold in his brain for seizures and, therefore, he has seizures. Thus. Epilepsy. The spasms are the way we first saw it presented, but he could have any kind of seizure.

All of this was FINALLY explained to me, yesterday, in a very clear manner by Dr. Q. We like Dr. Q. He's a good guy. He's helping my son so of course we like him! Along with explaining what's going on in Levi's head, he explained how we're going to manage Levi's seizures. So, the new medicine that I spoke of in my last post... the yucky one.....the one I don't want Levi to take..... yah, Dr. Q said he has to take it. He let me know that he would NOT prescribe medicine that isn't needed and that this is one of the most successful medications in preventing seizures. He also said that the doses prescribed to Levi should have minimal effects on him at this age. So, the plan is this: Over the next week and a half, Levi will complete his round of steroids which will also cancel out his need for Zantac and the antibiotics. So, we get to remove three of his meds! But, we started the yucky one tonight.

Levi will continue to be on this one until he has been seizure free for two years. That's right, TWO YEARS. It seems like forever. We'll continue to have intermittent appointments and EEG's. The next one is in two months and we'll go from there. Dr Q did say that we'll have to continue to keep Levi under CONSTANT surveillance. And I quote, "If you need to use the phone, keep the phone in the room with him. Don't leave him in a room alone." WHAT?! How am I supposed to cook dinner without him in the kitchen trying to throw himself into the oven? How am I supposed to go to the bathroom? Take a shower? (That last one already seems to be rare enough as it is)

And the answer is.......

(Drum roll please)

DO IT. I just have to do it. Sure it will be trying, but what can I do? Throw myself onto the floor kicking and screaming? Quit cooking and peeing and showering? None of that will solve the problem. It won't get anything done and it certainly won't make the seizures go away. I just have to do it. At this point, you might be thinking, "You go girl! Way to have a positive outlook! Way to stay strong!" But, in all reality, the real reason that I'm writing this is because it's true. Not because I'm excited about it or remotely want to "Just Do It" (Thanks alot, Nike!), but because I have to. And this is me telling myself that. I have to make the most of this season of life, whether it lasts two years or ten years. I really do want this to make me into a better and stronger person. Right now, I don't feel like that strong person. I feel emotionally and physically exhausted and I really don't know how I'm going to do it. But, I do know that if I can truly rely on the grace of God and find my rest and satisfaction in Him, I can do anything. (Now to get that from my head to my heart!) As daunting as this is, I know I'll make it through. We all will. And if I can truly seize the day (ha! there it is!), I'll come out of this a stronger, better person and, hopefully, an even better mother.

I'd say that's true for all of us and our trials. We all have them. Maybe it's seizures, maybe it's finances, maybe it's rebellious teenagers. But, if our prayer through these times can be, "Lord help me learn from this what you want me to learn. Help me become who you want me to be," that's when, I believe, we truly learn to Seize the Day.

Thursday, August 2, 2012

So, we lowered the dosage of steroids last Saturday and we've still had no seizures so today we're lowering the dose even more! I'm a little anxious, but it is exciting to get our normal Levi back. He's already been sleeping better and acting more like himself again. But his face. His face is huge. Now that he's acting more like himself he's looking less like himself and it's starting to get to me. Don't get me wrong, it's stinking adorable. But, when your baby doesn't look like your baby, it's disturbing, especially when it's because of the crazy chemicals you're pumping into his body.

Speaking of chemicals, the doctor called in yet another prescription for Levi - Topomax. Studies show that if children start to take this new drug while they're weaning off of the steroids the likelihood for recurrence of seizures drops even more. The negative thing is the side effects - drowsiness, dizziness, headaches, mental disconnect, nausea, tingling like pins and needles, and, my favorite, glaucoma. Our doctor friend told me that doctor's refer to it as Stupid-max because of the effect it has on a person. I haven't had the heart to give it to him yet. We have our follow up appointment tomorrow and I'm waiting to ask exactly how much of a difference it can make. I'd also like to be sure that the vitamin B6 isn't the cause. It is a temporary drug - he'd be on it for 4 to 5 weeks - but I just can't do it until I know exactly how necessary it is and how to handle the side-effects.

So far, I've been doing pretty well emotionally. But, I've been pretty emotional about this next appointment. First, Levi is going to need another EEG.. It was so terrible having that superglue matted in his hair. Some of it is still there even after a haircut so I'm thinking of just buzzing his hair off. But, I don't know if I can. I tear up just thinking about it. I've never been one to cry over a haircut, but combining a buzzed head with his massive face would just make him look even less like my baby and I don't know how well I'll handle that.

Haircut aside, I hate that he's going to have to go through all of this again. I keep telling him it's going to happen and that he's going to be okay, but, of course, he doesn't get it. The doctor says that he shouldn't need to stay the night which is good news, I think. There's part of me, though, (probably the same part that wanted to just move into the hospital and stay there so I could know Levi was being properly cared for) that wants to stay overnight. I don't want Levi to go through all of that, be sent home, and then called back because they weren't sure about something and have to go through it all again. I don't want them to miss anything. I want them to see everything that goes on in his brain all night long and make sure he's not having seizures in his sleep, when I can't watch him. At this point, all I can tell the doctor is that I haven't seen any seizures, but that doesn't mean he hasn't had any. I want to KNOW that he's okay, and only they can determine that.

So, please be praying for peace over Levi when they superglue those stupid probes to his head, for peace for me when they say it's time to go home and I want to stay to make sure they didn't miss anything, and for peace over Levi's body, that the seizures will be completely gone and NEVER return.